Mind Body EDS™ (MB-EDS) has announced the appointment of young award-winning film-maker, musician and EDS sufferer, Ashleigh Harley, to be its first Ambassador as the charity continues to build support and awareness of Ehlers-Danlos Syndromes (EDS), a potentially fatal connective tissue disorder affecting huge numbers of sufferers of all ages.
Ashleigh’s family first became aware that she had EDS when she was 12, but her symptoms were not officially diagnosed until several years later. She wrote her first novel, The Messenger, when episodically paralysed in hospital and subsequently directed a related fantasy film, The Wall of Lyon (www.ashleighharley.com/the-wall-of-lyon), which was showcased at the Cannes Film Festival and won over 40 awards internationally, including a BAFTA Cymru.
Working with Oscar-winning production team, Slick Films, and with support from MB-EDS, Ashleigh’s latest film ‘The Dark Horse’ documents her journey living with EDS and her mission as a keen horsewoman to get show jumping included in the World Paralympic Games. Due for release in 2021, the film will also feature MB-EDS founder Laura Sylvester’s own EDS story and, as with The Wall of Lyon, will be presented at film festivals and screenings around the world.
A passionate advocate in raising awareness for EDS, Ashleigh “is hugely excited to be able to collaborate with MB-EDS in this ambassadorial capacity. As a patient and a family suffering from this invisible but devastating illness,” she says, “we are totally aligned with the goals of this dynamic charity. I believe this collaboration will add valuable weight and gravitas in our campaign to achieve greater public awareness of the issues around EDS across a broad range of media channels.”
Bridging the funding gap
Launched in 2018, MB-EDS has undertaken a number of successful fundraising initiatives, which has enabled it to give more than £64,000 in grants to individuals desperate to speed up getting the right diagnosis and treatment for what is still a little-understood condition.
“However,” says MB-EDS chairman, John Hogan, “like other charities, the more recent switch by donors to generic NHS charities has had a devastating impact on our fundraising capability, with the result that we are currently unable to continue providing financial support to those in critical need. Although the funding focus on the terrific work being undertaken by the NHS in fighting the COVID-19 pandemic is understandable,” he believes, “the almost total loss of income to charities targeted at providing practical help to those with other chronic illnesses is impacting both sufferers’ physical and mental health.
“On the one hand, non-COVID-19 treatments and diagnoses are being delayed and put on hold. At the same time however, in the case of the large number of EDS sufferers for example who account for as much as 3% of the population, at a time of increased stress through enforced self-isolation the need for us to be able to connect with them and show that they are not alone becomes more important than ever,” he says.
As a result, Hogan is certain that the new ambassadorial appointment is timely in furthering the charity’s goals. “Ashleigh’s unique drive and experience will enable us to reach important new audiences and potential donors who, like us, want to make a real difference to people’s lives.”
To see the video song, ‘Worlds Apart’, which will feature in ‘The Dark Horse’, visit www.facebook.com/951789524976686/posts/1721519598003671/?vh=e&d=n To-date, the video song has achieved over 200,000 plays.
The press release accompanying the charity’s ambassador announcement can be found here.
